Imagine knowing there is something different about your baby boy. Imagine taking him from appointment to appointment and finally, when he is about one and a half years old, being told your son is profoundly deaf - a condition that affects about one in a thousand kids in the U.S.

This is the story of NY1 audio operator Olga Masakatov, her husband Georgy and their two-year-old son Nikos.

"It's a big shock because you don't have anyone in your family with hearing loss, so it hits you out of the blue," Olga says.

Nikos can make sounds, but after ear tubes, hearing aids and even cochlear implants, he couldn't hear them.

Doctors told Olga and Georgy that Nikos had been born without hearing nerves, a hereditary condition that until now had not affected anyone in their families.

"There are a small percentage of children that unfortunately won't benefit from a cochlear implant,” says Dr. Thomas Roland Jr, chairman of the Otolaryngology Department at NYU Langone. “These are profoundly hearing-impaired children because they're also born with either an absent cochlea or an absent nerve connecting the cochlea to the brain, to the auditory system."

Georgy says trying so many things and having none work is heartbreaking.

"It's a long process,” he says. “I mean, he's a tough guy -  for two and a half years. Some people don't have that much surgeries in their entire life and he had four of them already.  So we really, really hope he will hear."

The next plan of action was another operation - this time for an ABI, an Auditory Brainstem Implant. In 2013, the FDA granted NYU Langone and a handful of hospitals around the country approval to perform ABI on a select number of children – a procedure, until then, only done on older patients.

Nikos is the ninth child in Dr. Roland's trial. The hope it that the trial will be successful and the FDA will allow more children born without cochleas or cochlear nerves to have an ABI.

"Is it actually allowing them to develop language, oral language and is it safe to do,” he says. “And to date, fortunately everybody's been doing okay. There is a mix of outcomes but we'll be studying these children over time."

ABI is an intricate procedure that takes a team of doctors. Find out more in the next Healthy Living report.